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Wednesday, July 18, 2012

The Stone Soup Method

Once upon a time a poor man entered a village and asked if
the villagers had any food to spare. The villagers said no. It had been a hard
winter and each family was hoarding what little they had. The village was small
and the man was strange so though they would not help him, they began to watch
him. Perhaps he would leave if no food
was forthcoming or perhaps he would try to steal. The man did neither of these. He merely gathered
firewood and built a fire. He put his
cooking pot in the stream and hoisted the water-filled pot to his fire. Then while all the villagers peered around
doors and out of shuttered windows, the man made a big show of searching for
some rounded large stones in the stream.
He exclaimed upon finding each one. He rubbed them on his worn tunic and
praised their color and delicious odor and then tipped them into his pot.

The villagers were quite intrigued by his actions and slowly
found reasons to walk past the stranger’s fire. As they would pass he would run
a spoon into the water and state that his stone soup needed a little
seasoning. If only an old withered
carrot or bit of potatoes were available it would be an excellent soup. As the villagers returned to their cottages
they would ponder the man’s words and realize they perhaps had something to give. Each in turn began to offer a bit of this and
that. He would exclaim his appreciation
of each ingredient. The villagers were a competitive, yet caring lot and seeing
their neighbors praised encouraged them to give even more. As the day
progressed the pot became thick and hard to stir.

The stranger soon told the milling crowd the soup was
perfect and ladled a generous helping of soup into everyone’s bowl. All ate well that night filled with sustenance
and camaraderie. Everyone praised this
new recipe called Stone Soup.

So how does the stone soup method apply to my work medicine?

I don’t know if you have seen me paint at a medical
conference but I often think of the stranger in this tale as I paint. When I enter a room, I come burdened with
blank canvases and a heavy easel. People watch me set up my station intrigued
by an artist painting at a conference.
As the conference day begins my canvas is blank then slowly the words of
the speakers and attendees fill the air and I begin to paint. Soon the attendees come to the easel and
share their thoughts and feelings. My
painting fills with imagery just as the stranger’s pot fills with food. It is an amazing process.

In a little over two months the Partnership with Patients Summit
will be held in Kansas City
and we will be using the stone soup model. We will have a gathering of the Walking
Gallery, a traditional conference day and an unconference day. People who self-define as patient/patient
advocates will congregate with partners.
The partners could be providers, techies, venders, academics,
organizations or health policy wonks. We
will gather together to make a conference with everyone throwing something into
the pot. There will be a non-profit partner,
business partners and regular people creating a crowd-sourced and crowd-funded
conference.

The idea of a stone soup/crowd-sourced conference has confused
a few people. We are once again practicing
some creative destruction of the traditional form. This event is not funded by CMS Partnership for Patients, yet we are reporting back to them and focusing on their goals. This event is not organized by a non-profit,
though the Society for Participatory Medicine has agreed to create and oversee
a travel fund to help patients attend medical conferences such as this
one. Cerner is hosting us in their space
and acting as a partner, but this is not a Cerner conference. This is a patient summit; and I may be
stirring the pot, but I am one of many around the fire.

The Venue

Cerner has graciously offered to provide the “cooking pot”
for our conference in the form of their Riverside
educational building. This once was a
casino many years ago, and is a rather appropriate venue to place a bet. We are betting that we can do much if we just work together. The
building has been retrofitted with rooms and technology that supports
educational opportunities. You can register for the conference on eventbrite at
Partnership With Patients and ticket proceeds will pay for the overhead costs. The overhead cost will include food, transportation,
shuttles and conference materials.

Travel Scholarships

I asked the Society of Participatory Medicine if they would consider being our non-profit partner whose responsibility would be to create a patient travel scholarship fund. The board agreed that this was a good use of their energy and was in step with their mission. They further added they would like to create such a fund and continue to solicit funds for future conferences. Please send donation checks to The
Society for Participatory Medicine PO Box 1183Newburyport,
MA01950-1183. Please make checks payable to the
Society for Participatory Medicine and mark in the memo line "Travel Fund.".

Or you can donate online at the donations page, just click on the Travel Fund button. The Society for
Participatory Medicine is a 501(c)3 public charity. They will present a panel discussion during
the conference explaining the concept of the society and participatory
medicine. For the Partnership With Patient Summit they will be offering a limited number of $500 travel grants. The quantity they will be able to offer will be based on donation amounts they receive. Those who wish to receive such grants will write an essay explaining their need. Grantees will be chosen based on review by a committee from the Society.

I am asking you today to please donate to this fund. No amount is too small. Everything is appreciated. If you are able to give more that is wonderful.

The Walking Gallery

On Friday night September 21st, we will have a Kansas City gathering of The Walking Gallery. This will take place at the Kansas City Marriot. I will be asking for financial support to cover expenses for this venue on Medstartr, a new funding model created by Alex Fair.

The Traditional Conference Day

On Saturday the 22nd of Septemeber we will have a conference day that will break
into three tracks focusing on HIT, Patient Quality/Safety and
Media/Message. These sessions will be taught
by many different individuals who are volunteering their time and are leaders
in their fields. I will post the full
agenda as it forms.

The Unconference

Mark Scrimshire and Maumi J.Cannell Chatterton will be hosting
a HealthCamp KC unconference on Sunday the 23rd. That is the ingredient they are adding to
this stew of advocacy.

Speakers Boot Camp

Simultaneously, patient speakers will be given the
opportunity to present 5 minute speeches during a patient speaking session.
These speeches will be recorded by Cerner staff and uploaded to youtube. These speeches will be a great asset to
beginning speakers who have just joined Speakerlink.org and are building up
their online presence.

Many other folks have offered their time and skills to help
this process. As they send me their
offerings I will post them here, but suffice to say we are making a lovely
dish.

By the way the hashtag for this event on Twitter is #cinderblocks. It rather fits doesn’t it? When making a stone
soup, you must begin with stones.

And this story began many years ago when a little girl was in a class without books shelves...

When I was a child I went to an elementary school that had few resources. In fifth grade our class was donated a large amount of books. We were very pleased to have them, but we had no bookshelves on which to place them. My teacher was very enterprising though, and she contacted the local lumberyard and requested they donate some two by fours and cinder blocks so we could make shelves. The lumberyard manger said yes with one caveat, we would have to pick up the supplies.

That year our fifth grade class had a field trip.

We left the school as a class with our strong backs and eager minds. We walked to the lumberyard. Some of us grabbed the two by fours, some of us cinder blocks and some us combined the two to make a carry yoke for two students to heft. We walked those blocks all the way back to school and up three flights of stairs. Then we assembled those shelves and placed the books upon them. We stood back and looked proudly at our work. I cannot believe there was a class anywhere else in the entire nation who cherished their bookshelves as much as we did ours.

We loved those shelves because we overcame adversity and made that which we needed. It wasn't pretty, it wasn’t perfect, but it was ours.

Hi Regina, I've just got word of your great blog and conference. I'm a narcolepsy patient advocate (and an art-lover) living in Washington DC. I'm very interested in attending the upcoming conference. Thank you so much for organizing this amazing program. Cheers, Julie Flygare

The Walking Gallery Mini Doc

About Me

Regina Holliday is a resident of Grantsville, Maryland. She serves on the board of the local non-profit The Highland Thrift Shop. She is a member of the Grantsville Rotary Club. She is also Asst. Cubmaster of Pack 460 Cub Scouts.

In addition, Regina serves as a parent advisor to the Garrett County School Board Health Advisory Committee. She is also a member of the Garrett County Chamber of Commerce and The Garrett County Arts Council.

Ms. Holliday is an activist, artist, speaker and author. You might see her at a health conference painting the content she hears from the patient view. She is part the movement known as participatory medicine. She and others in this movement believe that the patient is a partner with their provider and both should work together as a team.

Regina is a mother and a widow; she speaks about the benefits of health information technology and timely data access for patients due to her family loss. In 2009, she painted a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. Her paintings became part of the national debate on health care reform and helped guide public policy.

She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits. Paint and patients, pills and policy all come together within The Walking Gallery of Healthcare. This "walking wall" of 330+ individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation.

She published a book with the Health Informatics Society of Australia (HISA) entitled: "The Walking Wall: 73 Cents to the Walking Gallery."